Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness
Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an "orphan" illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents of children with "orphan" illnesses requiring multidisciplinary care. METHOD: Participant-observations over 13 months (n=200) were combined with questionnaire data (n=55) to assess parental uncertainty at a multidisciplinary pediatric clinic. RESULTS: Five unique types of uncertainty emerged from a grounded analysis (Glaser & Strauss, 1967), revealing 11 interrelated uncertainties these parents experience. Findings can help providers understand parents' uncertainty and assist in family-centered decision-making.
2014-10
Kerr AM; Haas SM
Journal Of Pediatric Nursing
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pedn.2014.01.008" target="_blank" rel="noreferrer">10.1016/j.pedn.2014.01.008</a>
Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness
semi structured interview; terminal care; diagnostic error; human; article; child; female; male; diagnosis; childhood; clinical article; uncertainty; congenital blood vessel malformation
Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child's illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. While previous research has explored parents' uncertainty during a child's diagnosis and during end-of-life care, less is known about these experiences when the child is referred to a team of specialists for treatment. The aim of the current study was to explore how specialists, as credible authorities, influence parents' uncertainty during parents' first visit to a multidisciplinary clinic for the care of their child's complex chronic illness. Data were collected through semi-structured interviews with 29 parents after their child's first visit to a vascular anomaly clinic at a large Midwestern children's hospital. The results suggest parents' communication with credible authorities facilitates effective uncertainty management primarily through the mechanism of uncertainty reappraisal. The results also suggest that specialists, as credible authorities, are a key mechanism in the appraisal of uncertainty for conditions that are often misdiagnosed and mismanaged.
Kerr AM; Harrington NG; Scott AM
Health communication
2019
<a href="http://doi.org/10.1080/10410236.2017.1399508" target="_blank" rel="noreferrer noopener">10.1080/10410236.2017.1399508</a>